RareConnect

RareConnect es una comunidad online de pacientes con enfermedades raras, el proyecto está creado por Nord, Organización Americana de Enfermedades Raras y Eurordis que es una organización no gubernamental dirigida por los pacientes y que  alía a organizaciones de pacientes y a personas que trabajan en el campo de las enfermedades raras en Europa.
Ambas organizaciones son a su vez plataformas de  promoción, apoyo a la investigación, desarrollo de fármacos, sensibilización y otras acciones destinadas a luchar contra el impacto de las enfermedades raras en la vida de los pacientes y familiares.

http://www.rareconnect.org/en/about/rareconnect

RareConnect is an online community  created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders)
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. 
 The National Organization for Rare Disorders (NORD), is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.
Both organizations aims at improving the quality of life of people living with rare diseases  through advocacy, support for research and drug development.
The target of Rareconnect is to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.